Caryn

Hi Fixit, I'm sorry I'm not familiar with your whole story as I haven't been reading the boards much the last six months. I won't speak to the Pandas issue at all, since we didn't go that route treatment-wise. If your child has a true autoimmune issue (as I believe mine does) and corn is a trigger (like a true allergy) then it is a long process of learning what has corn in it and keeping the child completely corn-free in order to get the antibody levels down to a manageable level. For us it was a long slow process that took about five months on a really slow learning curve. I kept feeding my son things that he was reacting to because they had hidden corn and I didn't realize it. So if I had quit back then I would have thought that the elimination diet didn't work. In reality I wasn't doing it right. I met a few people online and found a fantastic website to help me get more effective at it. www.cornallergens.com Then I started calling manufacturers regularly to find hidden corn. I started my own safe list that included gluten free too. http://healthy-family.org/safe-products We started in the spring and he wasn't noticeably better until well into the fall, six months later. I think my son was pretty severe, from talking to others with corn allergies. I had to change shampoo, soap, toothpaste. Had to be careful with waxed fruit, avoid vanilla, all citric acid, all white vinegar, a ton of ingredients that you would not think are corn derived. It was crazy. Now, almost three years later he has a much higher tolerance for corn. We still stick to the diet but the few times he has accidentally eaten something he did not have the usual two weeks of constant ticcing or other reactions. It was much milder. The celiac specialist said that antibodies rise and fall slowly and not meal by meal as many think. It takes months, years for a celiac to get into a normal range. I think the same principle applies to all allergies. We tested our son about a year ago and his antibodies were still elevated-- after two years. They were close to normal but still elevated. The problem I find with the GFCF diet is that it does not fully address the possible fungal issues that are present in kids with neuro issues, especially Austism spectrum. It allows corn (highly fungal) and sugars in the diet in a child that is sick and reactive. I think that the sugar is better tolerated after the child is in a recovery stage but still has to be watched and minimal. It is inflammatory. Chocolate, peanuts, these are also problematic. It is hard to know what the right thing to do is. Just trust your instinct.

Abbe, At his worst he slept 7 hrs a day. It was horrendous. He would lie awake for up to two hours blinking in bed and I would sit with him in the dark and cry. He was a chronic bed wetter too, and that resolved after he was put on the anti-fungal diet for a while. Corn is a big trigger for him, hyperness, sleeplessness, bed wetting. He did have night wakings at that time but I don't know if that was so much his condition or my parenting. He was never a good sleeper and didn't sleep through the night until 6 mos old. My younger two were completely different and so was I, so am not sure if it was technique or his condition. The clean diet is less taxing on the liver and kidneys. I suppose that was the main thing. We did acupuncture for a short while but he was too young and didn't really take to it so we quit. He had light symptoms after we reintroduced more foods (sweets and stuff) and so I started NAC supps at a very low dose (like 1/4 a cap a day at 100 mg a cap, so about 25mg). The symptoms stopped completely. We kind of phased out the NAC and now he is in 'remission' again. So we will continue like this until we see symptoms and then we will start with NAC and possibly more restrictive diet again. I just don't see a reason to do it now when he is fine and happy and symptom free. I must watch to see if his symptoms are a seasonal thing. That is sometimes the case with these kids. We live near a corn field. Caryn

Faith, I went digging--- At birth our son was severely jaundiced and had high bilirubin levels. He remained jaundiced for about four weeks before it cleared. This is why I have always believed that the liver was his problem, that and a visit to an acupuncturist that also confirmed it when he was 4. At baseline when we had him tested at 3 1/2 while he was at the height of ticcing/ocd, etc..... his creatinine levels were VERY high (indicating problems with kidney function). His bilirubin levels at that time were not a significant factor. Interesting. I'm glad you asked. I might not have otherwise went back to look it up. Perhaps the kidneys were more effected in his case than the liver.... At that time his neutraphils were VERY high and his lymphs were very low, a sign of infection in the body. This is what led us to pursue the PANDAS dx initially but we later abandoned that idea as we further tested our son and discovered that he had metabolic issues that were affecting his symptoms and that there wasn't a tell tale sign of strep. This is very eye opening to me now as an 'after the fact' look, because the original doc did not even address the kidney issue at all with my son. I will have to look into it more in the future. I have sort of taken a break from it all over the last several months because I needed the mental and emotional break from it. We've just been enjoying life and living it to the fullest without focusing on what makes us 'unwhole'. And he has been doing so well that I haven't felt the need to investigate causes and effects. But I am so appreciative of all the help I received from people I have met online that I have an overwhelming need to pay it forward. Don't stop looking until you know the cause. Caryn

I apologize to those who are sick and tired of my anti corn posts. I have a strong passion for this as I saw first hand in our son the healing affects of removing corn from his diet and still believe that it was the most significant factor in his complete recovery. I wrote a summary of the study for anyone interested in reading about it. The findings are pretty damning for Monsanto. I am sick and tired of the corn lobbyists and the gov't risking our health in the name of profit. I hope they do another long term study like they proposed and we can start class action lawsuits against this corp. http://healthy-family.org/caryn/1308/monsa...mmals#more-1308 We have always felt that our son's liver was sluggish and that was the crux of his problem with the neuro issues. We have known and continue to believe that his sulfation system isn't strong-- but after three years completely off of any and all corn and corn byproducts it has actually improved on its own without any other treatments. We no longer eat corn-fed animal products-- we eat pasture fed only and only organic. He hasn't ticced in a long time, so long that he doesn't remember what it was like. He still will react if he gets accidental ingestion of corn in the form of dark red circles under his eyes-- a far cry from two weeks of chronic ticcing, or the chronic multifocal ticcing that he had at onset.

This is mainly for Faith, but also anyone else who may fit the bill. I'll start with a post I did way back when on it. Why am I so Edgy? Learn about Pyrrole Disorder (Pyroluria) The proper term for it is also Mauve, or High Mauve. It is hereditary and runs pretty commonly in families. We have more than one case of it in ours. I will tell you from both Dr. McGinnis's standpoint and my own personal experience with it dealing with more than one family member that it is tied very closely with food intolerance. When the diet is under control the condition is not only manageable but becomes very easy to 'forget' you have it. It is associated with Schizophrenia (which is tied to undiagnosed Celiac, and thus digestive issues), ADHD, Autism (50% of cases), Celiac (which is our other dx), etc..... So digestive issues are a subfactor in my opinion. Zinc supps are essential but that is not the only one that is imp., and the combos need to be monitored and balanced because high mauve means having such depletion that amounts considered toxic to a normal person are necessary for regulation and elimination of symptoms. It is a blood disorder. In our case we see infrequent flare ups during stressful times and when we 'go off the diet wagon'. We eat a diet high in the things that are needed for managing pyroluria, foods high in zinc, magnesium, and we take zinc, mag, and daily B complex. We also do probiotics in mulitiple forms including cultured milk products. We avoid nutrient pour food sources like refined sugars and complex carbs like corn. In our case B12 was needed as well even though not indicated in mauve as far as I know. Dr. McGinnis also wrote a paper that showed patients with mauve have a higher incidence of low glutathione than the average person. This affects immunity. In our case this was also true. As with Claire and a whole host of folks who posted about it on this forum years ago-- low glutathione is common in tics, T.S. I do not know how common pyroluria is in T.S., tics or in the general population. But if it is in your family it is common with your clan. We keep a clean diet here and stay away from most grains. We no longer use high doses of zinc as it is no longer needed. But when symptoms spike (like light sensitivity when outside becomes more apparent, etc.....) we then up the dose until the symptoms subside. A person dxd with this needs to be tested through urine at baseline (with no supps for I would say at least 48 hrs, but possibly 1 week) and then again after dx to test dosage results. And again every 3 mos as long as they are taking high doses of zinc. (over 50 and up to 100 mg a day is not uncommon in some cases and can be very toxic to the average person.) You need a doc that understands or is open minded to helping you manage it. IMO the need for the high doses coincided with lack of absorption that was directly caused by gut imbalances. When the digestive condition healed then the body began absorbing the nutrients in the food better. Having said this, it does not mean that a diet change will 'cure' it. It is just another way to keep it in balance like with Celiac, Crohns, etc.... We still supplement although it is at much lower 'maintenance' doses now. High doses will cause nausea and stomach upset. A sign Dr. McGinnis said to watch for when we were dealing with this initially several years ago. http://web.mac.com/autismprotocols/Site/Py...odymcginnis.pdf http://www.ncbi.nlm.nih.gov/pubmed/1851710...mp;ordinalpos=5 Caryn

ROTFL! It is great when that heavy burden is lifted and you learn to enjoy life again. Even when our son had casual light ticcing-- that was such a relief compared to the barage of multi symptoms that he once had. You suddenly realize that it is not the end of the world and life can go on and there is finally that peace in your heart that you never thought you'd find. Yeah, I think the yeast in our son is a constant battle that we have to keep in check through diet management. I met someone online about two years ago that taught me a lot about enzymatic function, etc... She seemed to have it in the family and used diet as part of a regime to keep them all happy and healthy digestively. Our three boys are close in age and over the holidays ate identically. Their bowel movements are vastly different, however. So the internal mechanisms in each child is unique and matters in the overall scheme of things. That is the way I look at things now. I know with Tigger that toxins are a concern. It is just his system. Like Q's mom said, our son's immune system is so much stronger now than it was even BEFORE his onset. I think that is key. He was coming off of reoccurring abx scripts and a series of vaxes at onset 3 1/2 yrs ago. So, CP, I think that was his catalyst, too-- the antibiotics coupled with the vaccines just lowered his immunity into developing an auto immune disorder. Last week our neighbors hosted an old maid night and two of my boys went over to play cards. They gave the kids Caprisun juice bags. Dye-free, not artificial anything. Well, both the boys had devoured two each. I am certain they have corn in them, as 99% of juice boxes do. My younger son had no effect from it whatsoever. Tigger looked sickly later that night. Big huge red patches under both his eyes and they lasted about three days. He's almost 7 now and knew that what he drank affected his face and was very concerned with his complexion and also complained of feeling moody for the same few days. Hubby and I were waiting for the bomb to drop. We were eyeballing that kid for days but he never ticced. We agreed that he has a much more delicate system than his bro. End of story. We are more lax now than before and can go days without supplementing and not think twice about it. Our diet is pretty pure and sometimes I think that is enough but we make sure they get the fatty acids as I think that is key for Tigger especially. He's thriving in 1st grade. Has really great handwriting, is generally very happy with himself, etc.... I am blessed that he has a wonderful teacher and she has a great classroom system that he responds so well to. Am glad to hear all the good news from long time posters. It is so nice to hear success stories. CP, tell your son to enjoy the superbowl with the guys. I can't think of a better place to be to watch the game. Hopefully they won't get a call in the middle of it.

Hi Everyone! It's nice to hear all the gals voices again... Glad things are going good CP. Think about you a lot, especially after Dallas. We changed up a couple things since then. We use NAC (although not every day and in a VERY low dose) and we use A LOT of omega 3 in our diet. We eat more fish, use flax and take fish oil supps. Anyway, it has been so long since Tigger has ticced, so long in fact, that he doesn't remember what it was like. Thank the Lord. He is still on his restrictive diet and still has underlying yeast issues that show their ugly head when we let him indulge in sweet things. (We avoid artificial everything, yeast, wheat, gluten, and corn but do allow sweets more than I care to). His symptoms are reoccurring white coating on the tongue after too many sweets and if he gets corned, dark red circles under his eyes. After all this time his threshhold is way up and he has even had GF pizza with corn meal on the bottom and did not tic afterward. But we don't encourage it as we don't want to rock the boat. We like where we are at and never want to go back. We also still do immune boosting supps and daily magnesium, but he eats dairy again and seemingly is having no problems. I also like to keep an eye on that. He eats mostly cultured stuff. So I am continually thankful that he has recovered and I pray that he continues to stay in recovery. Caryn BTW, I was interviewed by Doug Kaufmann a couple mos back for his T.V. show. It airs on I believe the 18th of January. I didn't get flown into his studio or anything. It was a phone interview. Only five minutes or so. We chatted a long time off air and he was great. He was one of the original developers of the IgG allergy testing and explained to me that they are not accurate because the samples are loaded with mycotoxins and that is what the body is reacting to-- the fungi. I think he may be on to something. We did not know about his diet or his program when we started our journey, but his IgG test was high in all the moldy foods and when we removed all of them (17) we essentially had him on an anti-fungal diet anyway. Interesting. Our new year's resolution is to cut out the excess sweets and try to make more dishes out of his recipe book. I got his books on tape for free as a thank you too. Keep up the good work, moms! We are warriors, as Jenny McCarthy says! Happy New Year and all the best. XOXOXO

There is a lot of research on false negative readings on celiac tests in pediatrics. If your child has low IgA then there is a high likelihood that the celiac will be a false negative. Also, celiac gene is associated with MANY autoimmune disorders. Especially DQ2, the more common one.

Wendy, Yes I did take probiotics regularly. I was on antibiotics for the better part of a year and it saved my life. I was six years old and weighed about 50 pounds and took about 250 mg a day of antibiotics (keflex, if you want to know the exact brand) to keep me alive. Without the long term antibiotics I would not have been strong enough to withstand the surgery and recovery (was in the hospital for nearly a month, hooked up to a catheter). I was born with a congenital hereditary disorder and I was very sick, in an oxygen tank at 4 mos because I developed severe pneumonia as a result. I ran fevers of 108 or better on various occasions and was hospitalized so many times that I knew the nurses who cared for me very well. My kidneys were poisoning my body with toxins on a daily basis until my pediatrician finally decided to send me to a urologist for testing. Then I had corrective surgery. I was a very sickly child and developed many allergies after my surgery. Had numerous food intolerances but was never put on a special diet (who did that in those days?) I used to get huge fat lips whenever I ate melons. My tongue and the roof of my mouth were always itchy. I had a mottled tongue. Hand many cavities, have terrible white spots on my teeth due to enamel damage. And was constantly on allergy meds, etc....so bad that I needed surgery in my late teens on sinuses, had to remove polyps, had severe candida in my sinuses but kept getting prescribed antibiotic treatments by my ENT. Was very counterproductive for my health and this continued for 10 years. For one whole year I could not breath at all through my nose when I lay down. Talk about miserable. I had terrible headaches and was so fatigued but had insomnia because I couldn't breath at night. As a young adult I suffered from many symptoms of candida overgrowth and had many symptoms not understood by many docs I visited. I won't go into detail but let's just say that my stomach acted like a brewery. It wasn't until my son was dxd and I put him on the anti-candida diet that I realized it had been my own personal problem all along. Now I breath right. Now a cold really only lasts 7 days anymore. I finally feel healthy. I am at peace. It took 30 years to get here. There are many digestive imbalances that can and do occur with large doses of antibiotics. When the bowel is so stripped of bacteria long term how does one properly digest one's food? Do you do lab testing to make sure the nutrient levels in your child's blood are adequate on a regular basis? Are you worried about C-diff or other complications? Have you thought about life long complications? My mother rotated the antibiotic with the probiotic. She was very aware of the side effects. There are just certain things that occur when the body is put under that kind of stress for long periods of time. H-pylori is another problem that I would be concerned about, especially with such high doses. But I am sure Dr. K is fully aware of all the complications and has informed you of how to handle things. I am certain he has you working with a gastroenterologist as well. Thanks for the info on cam kinase. I understand that it is a trial and not a definitive marker for PANDAS at this time. It is also not FDA approved, I've been told. That doesn't mean it isn't valuable. It could be a major breakthrough. It could also be disproved someday. Right now my son is fine but if he develops OCD again out of the blue in a few years I will be sure to order the test to be on the safe side. Thanks for the heads up. Right now I am happy with his cure and do not feel the need to medicate him with antibiotics. Cessation of symptoms that rebound years later is very common among Celiacs when they are not practicing a gluten free diet. 80% of our immunity is housed in our gut. So autoimmune disorders are often corrected when gut imbalances are cured. Crohns, MS, etc.... But it takes a very long time as we have to wait for the villi to heal. Likewise, once they are healed the presence of bacteria and fungus that infected the body during dysbiosis dissipates over time until the symptoms recede. When the gut is in balance there is no infectious agent wreaking havoc. When the gut is in balance the antibody levels drop. Health has to do with the body's PH levels. When the body is acidic it develops a disease state. When it is alkaline we are in good health. So if a person heals but does not maintain an alkaline state, eventually the disease state will return and thus the symptoms. Antibody levels rise and fall like a helium balloon, slowly. Celiac experts have found that for some it can take two years for antibodies to go down to a normal level after starting a gluten free diet. Two years later my son was at 16. Normal is 10 and under. Likewise it could take two or more years to return to a disease state after one jumps off the bandwagon. So I do not have any fear that the beast is knocking on the door waiting to attack my son again. I think we are in the clear as his lab tests say we are on track. My son can eat a dunkin donut today and not tic. Do we allow that? No. He could probably eat one every day for six months and not tic. I bet he would have digestive issues. After a year, when the villi are destroyed completely again he would probably show signs of neurological problems. He would be extremely moody, irritable, and probably have OCD tendencies again. This is my opinion. I don't plan to instill a dunkin donut diet to prove it is true, but from all my research I have come to understand that this is true for most folks diagnosed with Celiac. Maybe I'm a fool. Maybe not. Only time will tell. There is a lot we don't know about autoimmune disorders. There is a lot we do. I suppose we can agree to disagree on some things.

momofgirls, What is the diagnostic proof that your daughter in fact has PANDAS? Antibiotics are a common treatment for autoimmune disorders in general to keep them in remission or to lessen symptoms. Was there a specific lab test that proved in fact you were dealing with strep bacteria? Are you using any other form of treatment besides the antibiotics? Long term antibiotics come with a whole host of possible side effects (I know personally because I was on them long term for a kidney disorder as a child. They saved my life but also made me very sick digestively). They are not necessary to cure a person and if a person is misdiagnosed they can cause more harm than good in the long run. I do not doubt this treatment has worked for many but it is not the only course of treatment for tics/tourette syndrome, even in the worst of cases as it may seem. My son is symptom free, still, after a very aggressive onset at age 3 1/2, one which had negative PANDAS titers but for all practical purposes LOOKED like PANDAS. We saw major behavioral issues and OCD, ADHD symptoms. What we were dealing with was a vaccine injury that resulted in the onset of celiac disease which spiraled out of control until our son needed to be pulled out of preschool for two weeks. He had and still has low glutathione without supplementation. This has been very helpful in keeping him healthy and symptom free. He was also diagnosed with Pyroluria through a urine test and the supplements he gets for that also help keep him symptom free. For him the trick is to keep the liver functioning optimally-- keep the toxins low and help stimulate it to produce the proper amount of enzymes. Celiac disease is another autoimmune disorder that is associated with neurological issues, as is lyme disease. Tics can be present in both conditions, so can OCD. So you see, there is a lot of lab testing to be done to determine what makes a child tic. Our son's cure meant a special elimination diet. We never used antibiotics as a treatment, or IVIG, or plasma therapy. I am not saying that it isn't necessary for some, but I don't want people thinking that it is necessary in all cases or else the sky will fall down on them. I was so scared by the PANDAS parents' postings in the beginning that I worried I was doing the wrong thing by following an elimination diet. My son tested positive for 17 allergens and the success of that diet was slow going. I committed myself to doing it for six months at least. Boy am I glad I did that. I certainly would have quit several times along the way as he waxed and waned a lot during that period. His digestive problems were so complex and so far reaching that it took nearly a year to get him to a place where I felt I had done the right thing. You may find this dissertation interesting: Is Gilles de la Tourette's Syndrome an Autoimmune Disease? (online thesis) I agree 100% that we are dealing with an autoimmune issue over here at our house. It is certainly NOT PANDAS in our case. I also want to stress that the traditional treatment for PANDAS is not the only treatment option. We have had LONG TERM success with the natural treatment route of dietary/supplemental intervention and continual LAB TESTING to monitor our son's autoimmune disorder and to make sure that his gluten antibodies remain in the low/normal range. We use stool samples and blood samples to monitor this. He remains symptom free and has been 99% symptom free for almost two years now. Just food for thought.

Come to think of it, the allergy meds probably contain corn too. My son was very reactive to corn. He had severe chronic multifocal ticcing and OCD symptoms at onset. He had gut problems, etc... Many thought it was PANDAS too and I did the testing and it was negative too. If corn is the problem then you have to really do research and remove all the corn, in shampoos, lotions, medicines, supplements, and learn all the names of byproducts that contain corn. Avoid salt, vanilla, citric acid, etc.... as they all contain corn by-products. When the antibody levels lower (and this takes time, like years) then your son's tolerance will improve and you will not see the waxing and waning like at onset when his immune system is really weakened and out of whack. We are on the diet almost three years and my son is completely fine. No waxing and waning, not even with a cold. He has no special needs at school. No signs of OCD, ADHD, etc.... This did not happen overnight. It took year, to be honest, to get to the point where I felt our treatment choice had really worked and was the right answer. We did many things for our son, as you know. This was and still is the single most important treatment to keep him healthy and symptom free. We do not use OTC medicines for him as they are all laced with corn. The only allergy med we've used is Benadryl dye free caps and they have corn in them (sorbitol). Corn is TOUGH. It is harder than GF because of the laws in this country. Manufacturers do not have to label. Once you eliminate all kinds of corn byproducts it still takes time to get the antibodies down and you have to be patient. I have always said and still believe that corn has been worse for my son's neuro issues than wheat. Just no one is studying this. Just imagine a helium balloon. Think about how long it takes for that balloon to fall to the earth and deflate to the point where it is on the ground. That is how antibodies work. They do not spike and ebb with every meal. They have to slowly decline over time, months, years. So you have to expect that when they are high and reactive you are going to see behaviors with minute amounts of exposure. The longer you abstain the more the antibodies get a chance to slowly come down to the point where a minute amount doesn't cause a major spike in symptoms. Best of luck.

Kids Calm is NOT corn free. Just a hunch, but I am thinking your son may not be completely corn free and that is why you are not seeing relief. We have a son with corn allergies and the neuro reaction when he gets corn is significant. http://healthy-family.org

CP, Yes, Suzanne Somers talks about limiting and avoiding Omega 6s for anti-aging and inflammation. Can't remember specifically. Have to pick up the kids in a few minutes but will get back to you. I will try to find the book and passage in my spare time (ha!). We do high fish oils and limit the 6s. I can't remember where I read it, but somewhere I ran across an expert saying that our modern diet is way to high in them and that most folks are imbalanced. I will look into it more later when I have a chance. Been a very busy summer. We did a lot of traveling and renovating and have finally got the boys all settled at school. So happy to hear that things are going great. At some point we will have to compare notes since the conference. I've been meaning to get back in touch for a while. So glad things are on the up and up! Caryn

Lenny, We have a similar story, only our son started ticcing at age 3 and was tic free after about a year on the diet. We had to eliminated wheat, gluten, corn and all artificials. We do an antifungal diet to maintain his recovery. He is now 6 1/2 and has not had a wax on in over a year. (Last wax on was due to eating three freeze pops at school loaded with high fructose corn syrup and artificial colors). So I agree those things made a huge difference for us too. We also have light sensitivity issues that peak and ebb on occasion. I have guessed it was related to zinc deficiency. My son was also dxd with pyroluria and that is stress related and will cause depletion of zinc, b6, and magnesium. We did get him polarized sunglasses and when he has a day where the light seems to bother him I just give him a larger dose of zinc until it eases off. His symptoms are not blinking but a really bothersome squint and inability to fully open his eyes in broad daylight. Just thought I would share. Our stories are almost identical. Caryn

abbe, Ours was a blood and hair analysis. Hair analysis, Dee, is just a 'close to the scalp' snipping of a pretty large section of hair (about a square inch). Abbe, low glutathione levels could be the culprit. I think when I did my research on it awhile back on this board it was a common find. It is true for our son, too. We have noticed that NAC offers a good boost when he has had an accidental exposure to a toxin. Our son was dxd with pyroluria too, and low glutathione is common with that condition. I agree with Cheri, too. Yes, I think that the sour cream could have triggered it if it had chemicals and if his dairy intolerance is severe. My son was very reactive in the beginning before we got his gut into balance. The slightest thing would cause a wax on. He also had multifocal ticcing. That has all been a thing of the past for quite some time. So hang in there. Just keep telling yourself that it takes time to heal the body and let the wax ons come without too much anxiety. T.S. is a condition you manage, not cure. Finding the balance will take time and if your child senses your anxiety it will rub off. This was so hard for me to learn. I was so obsessed with curing my son that it consumed me. I have a much more balanced perspective about it, especially since we now know what the triggers are and also how to avoid them. Keep the bucket theory in mind and over time you will learn through trial and error what tips it. I remember in the beginning how my son seemed to 'go off the deep end' after eating a yogurt at my mother's house. I remember thinking how insane it was to even think that a yogurt could have caused it, but believing it did at the same time. (Now looking back I recognize the reasons: artificial food coloring, corn starch, and corn syrup.....) But at the time we hadn't even done the IgG food intolerance testing or started the Feingold diet. I remember reading a bit about mercury chelation back when I thought that metals were the problem. It takes time to rid the body of the metals so there will be setbacks. The answers are not always cut and dry but with perseverance you may see significant improvements in time as you learn by trial and error. Hang in there.

abbe, Did you try a dairy free diet with your son? You mentioned his tics erupting after eating a lot of dairy (sour cream, etc....). I am just curious. You also mentioned mycoplasma infection. Has he been on a lot of antibiotics recently? Did you test for metals? We had a naturopath prescribe a metals chelation for our son and it made me very uncomfortable as she did not test for metals first. I gave it to him one day and then called and asked if I could have metals testing done first. She was not too thrilled with me so I went elsewhere for the tests. Our new Dan doc ran them and they showed he had no metals poisoning at all. He had anemia and was high in copper (coupled together this pointed to probably celiac). For us that was the answer. I just mentioned the dairy because MANY folks on this board doing elimination diets have seen significant improvement just by removing dairy and the improvement shows within a week. You have a lot going on. This may not be the issue but in the event it is a major trigger it is an easy fix. There are a lot of non-dairy options these days. Our local grocer now sells coconut yogurt and milk, for example. Palm oil makes a good frosting for a cake, etc..... Caryn (Who's son used to be dairy free when he had a leaky gut but now eats it again and has no or very low symptoms now for 2 years and counting. All we do is watch what he eats and avoid gluten, wheat, corn, and artificial colors, flavors, and preservatives. He takes normal doses of vitamins and minerals and fish oil. We supplement with vit. D in the winter.)

Are you on high doses of b6? We saw a temporary salicylate sensitivity when we were giving our son high doses of B6. We greatly reduced the dose and over time his salicylate sensitivity waned. He is fine now. I agree that a chiro might be helpful. Our son had a neck injury and although it did not stop the ticcing (his cause was food) it did give him great physical relief.

Inflammation and pain could be a sign of mycotoxins. Google mycoplasma infection and mycotoxins. Doug Kaufmann's work on this subject is phenomenal. http://knowthecause.com/Home/tabid/36/Default.aspx This is similar to a candida diet. There are thousands of mycotoxins. My girlfriend is doing his diet for lupus and scleroderma. She went with me to the conference and heard him speak. She has lost 35 lbs and has no joint pain and feels great.

Chap, The white blood cell test is the IgG. I'm in the states so I did not get testing w/ dr. Ford, but he did recommend Enterolabs in Texas and we use them for our ongoing lab work. He and I had several email contacts a couple of years ago when my son was very sick and reactive. He helped point me in the right direction. Dr. Ford believes Celiac is a regressive disease that is inherited from birth, so he very much is in line with your thinking-- He advocates a gf diet when there is gluten intolerance and not *yet* celiac. Here is an article by him at celiac.com: http://www.celiac.com/articles/1085/1/Glut...RACP/Page1.html Dairy intolerance and gluten intolerance often go hand-in-hand. Many new to the gf diet find that they have to also eliminate dairy, sometimes soy, and often corn until their gut heals. Here is info on his clinic: http://www.drrodneyford.com/index.php/2008...ppointment.html

Chap, In New Zealand? Look up Dr. Rodney Ford! He is a ped. gastro who specializes in gluten intolerance/celiac. He helped me via email a few years ago and was terrific. He's located in ChristChurch. 64 3 377 3602

I think would ask for a celiac screen. According to doctors at Columbia University Hospital, elevated tdg6 levels are associated with neurological manifestations. I thought my son was pandas too in the beginning. He had negative titers and I was pressured to believe it still could be pandas by some folks. We did a whole host of tests on nutrient levels etc.... and discovered, eventually, that he had undiagnosed celiac. He is completely fine and after being gluten free, corn free, and artificial ingredient free for 2 1/2 years he has not had another relapse. (The problem in our son's case involves a sluggish liver and so we have to keep the fungal feeding foods down and watch the toxins in the diet. He was really bad at dx and everyone that knows him will say that he is a completely different kid now, so I am really convinced that there is a connection. our story is here: http://healthy-family.org/caryn/289 If there is a gut problem (80% of the immune system is housed in the gut) then the antibiotics will quite possibly cause dysbiosis to develop or worsen, thus making rebounding infections more likely. You really need to do tests to rule out Celiac/gluten intolerance/ candida overgrowth, fungal issues in the gut at the very least, if CD is in the family. They claim that 99% of celiacs in the U.S. are currently undiagnosed. One in 100 have the disease and in some cases the number is 3%! We all eat the GF diet here. My husband and other two boys will eat gluten on rare occasions but my son and I strictly adhere to a GF diet.

Interesting study from Scientific American about Celiac Disease out in August: Study of a potentially fatal food-triggered disease has uncovered a process that may contribute to many autoimmune disorders "What is more, CD provides an illuminating example of the way such a triad—an environmental trigger, susceptibility genes and a gut abnormality—may play a role in many autoimmune disorders. Research into CD has thus suggested new types of treatment not only for the disease itself but also for various other autoimmune conditions, such as type 1 diabetes, multiple sclerosis and rheumatoid arthritis." 80% of our immunity is housed in the gut, for those with kids that struggle with immune-related T.S. issues this study solidifies the notion that the gut is the first place to investigate and perhaps the key place to focus for gradual healing..... http://www.scientificamerican.com/article....isease-insights We truly are what we eat.... and get exposed to, and inherit.......

I have a friend who is 'cured' from Crohns via a specific diet through a clinical trial a few years ago. She is not on any meds and has no symptoms but eats a specific diet. I could put you in contact with her if you wish. She does not have tics. She did have Crohns so bad that she needed to do emergency removal surgery of part of her intestines.

...Behavioral disorders such as schizophrenia, depression, and obsessional neurosis have been described in children with CD for a long time. In a large screening study of patients age 6–16 years, most of the detected CD cases showed illness of low-grade intensity that was often associated with "decreased psychophysical well-being."1 Furthermore, a recent study found that CD was associated with increased prevalence of depressive and disruptive behavioral disorders in adolescents, particularly in the phase before diet-based treatment.2 Of note, in some cases, psychiatric symptoms appeared to improve after the patients started a gluten-free diet.2.... http://psy.psychiatryonline.org/cgi/content/full/50/3/300 False negative results on a Celiac Disease test is very common in children due to and IgA issue. I HIGHLY suggest anyone with pediatric issues of OCD and a negative celiac screen to try a trial period of a gluten free diet. For best results I would suggest a grainless diet initially as it is probable that there are multiple allergies (another possible side effect of undiagnosed CD/gluten intolerance). FYI, scientists are quickly learning that there is much more involved in gluten intolerance/celiac than originally thought. Currently there are 9 gluten intolerant genes discovered and only 2 are associated with Celiac. What are the other 7 associated with????? Scientists are now pointing to the fact that CD probability has risen 4 times since the 1950s (another recent study using GI blood samples frozen in storage during WWII against modern samples). Many are claiming that genetically modified grains are the cause, many say food processing, many say overuse of antibiotics, etc..... We just don't know why, but it is happening. So if you are struggling, try the diet for a few months and see if you don't start to get improvements. Do a little research to make sure you are really gluten free because minute amounts will be detrimental. Caryn http://healthy-family.org

We used threelac. I wouldn't do too many at once. Later we realized that old fashioned kefir was better. Nothing works as good as a healthy diet.